Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Celiac.com Sponsor:                                    


Photo
- - - - -

What Happened To Me? Could Celiacs Have Caused All Of This?


  • Please log in to reply

19 replies to this topic

#1 JoyMurphy

 
JoyMurphy

    Community Member

  • Advanced Members
  • PipPipPip
  • 46 posts
 

Posted 29 July 2012 - 01:06 PM

Sometimes, I am surprised I am still alive. I don't understand what happened to me.
My low points? My dad rushing me to the ER bc he thought I was dying. I was grey, eyes sunken, emaciated, dehydrated and babbling. The ER doc looked at me and said, I dont understand what you are doing hear or what you want me to do for you!
Or upon waking from a colonoscopy and the nurse cheerfully informed me everything was great! I burst into tears, told her I wanted to go to Boston and I wanted to get better. She told me, maybe I should talk to someone b/c I was depressed. I was sure she was telling me this was all in my head and I was making it all up.
My hell started in December (but can be traced back further) I became alarmed with memory loss. I would forget intense detailed conversations. I had poor word recall and name recall. Not normal stuff, I'm talking severe, people looked at me strangely. My fatigue worse than I had ever felt, 100x worse than pregnancy. Reflux and heartburn went through the roof and I was always nauseas. Distention and diarhea that more resembled urine. My psoriasis exasorbated, joint pain got to the pint where I couldn't walk down the stairs in the am, I slid down the wall. I was up 5 x a night to pee (not much) and had frequent night sweats, enlarged lymph nodes in front and back of the neck
I went to the dr. He suggested I could be diabetic or just depressed. He ran blood tests, called me a few days later w ith the good news I was just fine! Really?
I saw a homeopath for hormone testing to see if my mood swings and night sweats were early peri menopause. She told me she though the real problem was in my gut and I wouldn't feel better until I healed it. She thought I definitely had some food allergies, which made since bc, whenever I ate I got severely congested. She suggested I get off gluten and dairy and see if I felt any better. is take #1.... I got off gluten without a celiac screen. The good news, I started to feel better than I ever felt in my life, my color was better, swelling was down, only woke 2x a night..could now sleep on both sides of my body, reflux was better.
Then, it was like stepping on a hornets nest. I was getting sick all the time. I was blaming it on being cross contaminated everywhere. I was getting weaker and weaker. The homeopath did more allergy testing. I tested possitive for 35 + foods, and reacted to countless more. I was put on an elimination and rotation diet. I realized things I had felt for years and passed off, we're actual allergic reactions.
My body started to reject almost every food I put into it. I was losing a lb a day. In a month I had lost about 25 lbs. I couldn't get off the couch. I could barely walk to the bathroom or shower without passing out. When I walked it felt as if I was sinking into the floor. I needed to be supported when walking a longer distance. I could no longer drive or take care of my kids. That was the end of April.
I went back to my pcp...said something is not right please help me. My BP was through the roof, more blood tests revealed I had a high ANA, 640. My pcp sent me too a rheumatologist. Another week past. They thought I had lupus, the testing took 2 weeks, but the rhuemy told me it had nothing to do with my stomach issues. I burst into tears. No one was helping me. I called pcp, crying, demanding him to do something, he hadn't even ran an X-ray. So he told me to try to get in with a gi... Who thank god took pity on me and saw me. He said.."omg, you are a walking autoimmune disease!!!". Thought my neg celiac screen was high, especially for being off gluten for 3 months. He scheduled a colonoscopy and endoscopy. Then an upper gi and lower bowel series. Again everything looked great and I'm thinking everyone things I'm nuts!!!!!!! The gi wanted me to go to Beth Israel which was where I wanted to be. I was getting worse. I though, and my family thought I was dying. The drs all said I was fine.
I couldn't hold a coherent conversation. I would talk to someone on the phone and hang up mid sentence. My voice was weak and unrecognisable.
Within a week of getting to beth Israel my celiacs was confirmed, I was diagnosed with a neuroendocrine tumor on my pancreas. No one could understand my wide span of symptoms, the neurologist, hematologist, and rheumatologist thought I'd be better after the tumor was removed. Still not sure if anything else was wrong. Why was my Ana so high????
What laid me out for months where I couldn't get off the couch, screamed in pain if my legs were touched. Had a low grade fever everyday. Can only tolerate rice cakes, plain beef, pork, rice, steamed carrots, rice or white sweet potato, salt and pepper. Anything else I have reactions to.
After the surgery I can walk 6 driveways. I had a setback the other day that landed me in the hospital with pains as bad as the first day of surgery. No one can explain.
I have missed my spring and my summer. What happened to me?
The past few days I have been sick and exhausted from being glutened on Friday night. No one believes me that I could still be reacting to something that many days ago.
I just want to cry. Please help me
Joy
  • 0

Celiac.com Sponsor:

#2 Razzle Dazzle Brazell

 
Razzle Dazzle Brazell

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 399 posts
 

Posted 29 July 2012 - 02:18 PM

Sometimes, I am surprised I am still alive. I don't understand what happened to me.
My low points? My dad rushing me to the ER bc he thought I was dying. I was grey, eyes sunken, emaciated, dehydrated and babbling. The ER doc looked at me and said, I dont understand what you are doing hear or what you want me to do for you!
Or upon waking from a colonoscopy and the nurse cheerfully informed me everything was great! I burst into tears, told her I wanted to go to Boston and I wanted to get better. She told me, maybe I should talk to someone b/c I was depressed. I was sure she was telling me this was all in my head and I was making it all up.
My hell started in December (but can be traced back further) I became alarmed with memory loss. I would forget intense detailed conversations. I had poor word recall and name recall. Not normal stuff, I'm talking severe, people looked at me strangely. My fatigue worse than I had ever felt, 100x worse than pregnancy. Reflux and heartburn went through the roof and I was always nauseas. Distention and diarhea that more resembled urine. My psoriasis exasorbated, joint pain got to the pint where I couldn't walk down the stairs in the am, I slid down the wall. I was up 5 x a night to pee (not much) and had frequent night sweats, enlarged lymph nodes in front and back of the neck
I went to the dr. He suggested I could be diabetic or just depressed. He ran blood tests, called me a few days later w ith the good news I was just fine! Really?
I saw a homeopath for hormone testing to see if my mood swings and night sweats were early peri menopause. She told me she though the real problem was in my gut and I wouldn't feel better until I healed it. She thought I definitely had some food allergies, which made since bc, whenever I ate I got severely congested. She suggested I get off gluten and dairy and see if I felt any better. is take #1.... I got off gluten without a celiac screen. The good news, I started to feel better than I ever felt in my life, my color was better, swelling was down, only woke 2x a night..could now sleep on both sides of my body, reflux was better.
Then, it was like stepping on a hornets nest. I was getting sick all the time. I was blaming it on being cross contaminated everywhere. I was getting weaker and weaker. The homeopath did more allergy testing. I tested possitive for 35 + foods, and reacted to countless more. I was put on an elimination and rotation diet. I realized things I had felt for years and passed off, we're actual allergic reactions.
My body started to reject almost every food I put into it. I was losing a lb a day. In a month I had lost about 25 lbs. I couldn't get off the couch. I could barely walk to the bathroom or shower without passing out. When I walked it felt as if I was sinking into the floor. I needed to be supported when walking a longer distance. I could no longer drive or take care of my kids. That was the end of April.
I went back to my pcp...said something is not right please help me. My BP was through the roof, more blood tests revealed I had a high ANA, 640. My pcp sent me too a rheumatologist. Another week past. They thought I had lupus, the testing took 2 weeks, but the rhuemy told me it had nothing to do with my stomach issues. I burst into tears. No one was helping me. I called pcp, crying, demanding him to do something, he hadn't even ran an X-ray. So he told me to try to get in with a gi... Who thank god took pity on me and saw me. He said.."omg, you are a walking autoimmune disease!!!". Thought my neg celiac screen was high, especially for being off gluten for 3 months. He scheduled a colonoscopy and endoscopy. Then an upper gi and lower bowel series. Again everything looked great and I'm thinking everyone things I'm nuts!!!!!!! The gi wanted me to go to Beth Israel which was where I wanted to be. I was getting worse. I though, and my family thought I was dying. The drs all said I was fine.
I couldn't hold a coherent conversation. I would talk to someone on the phone and hang up mid sentence. My voice was weak and unrecognisable.
Within a week of getting to beth Israel my celiacs was confirmed, I was diagnosed with a neuroendocrine tumor on my pancreas. No one could understand my wide span of symptoms, the neurologist, hematologist, and rheumatologist thought I'd be better after the tumor was removed. Still not sure if anything else was wrong. Why was my Ana so high????
What laid me out for months where I couldn't get off the couch, screamed in pain if my legs were touched. Had a low grade fever everyday. Can only tolerate rice cakes, plain beef, pork, rice, steamed carrots, rice or white sweet potato, salt and pepper. Anything else I have reactions to.
After the surgery I can walk 6 driveways. I had a setback the other day that landed me in the hospital with pains as bad as the first day of surgery. No one can explain.
I have missed my spring and my summer. What happened to me?
The past few days I have been sick and exhausted from being glutened on Friday night. No one believes me that I could still be reacting to something that many days ago.
I just want to cry. Please help me
Joy


Hi sweety. I feel much empathy for all that you have endured! I was wondering whether you could see a specialist and find someone who will put you on an immune system surpressor if that is safe for you. As I'll as you are it seems you need something to counteract you immune system for a while. Don't give up! If you try your best to remain gluten free I am sure it will get better. As your horribly damaged gut (sounds like yours is one of the worst I have heard), your leaky gut will begin to heal itself and many of those allergies may just disappear. It may take a while but things will change I am sure. Many people on here were very I'll as you have been and claim they almost died. Please do not worry about what others think. I did for a while but I realized when i felt better, it was very evident I was a different person off gluten.

I, myself, was treated like my illness was in my head, simply because they couldn't figure out what was wrong. I was only 17 when I had my first trip to the ER and was treated like I was too young to be ill. I imagine i could have avoided a lot of pain and frustration if I had been diagnosed earlier. I can't imagine how bad it must be to have suffered so long with no diagnosis. There is hope!

Perhaps if your family doesn't understand delayed reactions you can find some similar posts on here about delayed and prolonged reactions, both.
  • 0
Gluten and Oat Free 6/'12
Dairy, Corn and Yeast free 7/'12
Nightshade Free, Candida diet & low salicylates 8/'12
Nightshades and carbs and sugars limitedly reintroduced, most salicylates now tolerated 9/'12
No longer Reacting to yeasty breads 10/'12
Test confirmed yeast overgrowth, back on Candida diet 11/'12

You only get one life so make it count.

#3 Mateto

 
Mateto

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 189 posts
 

Posted 29 July 2012 - 04:21 PM

Your post got me emotional :(
I know what it's like. The doctor thinks you're looney, but you're not. You are SICK.
I wasn't as bad as you, but my doctor thought I was anorexic and depressed and everything thrown in. No, I was sick...I think a lot of doctors just want to keep us going for a while. It's ridiculous, NO ONE is too young to be ill.
  • 0
Gluten-free since St George's Day this year :)

#4 GottaSki

 
GottaSki

    "The past is the past...I've got places to be."

  • Advanced Members
  • PipPipPipPipPipPip
  • 5,100 posts
 

Posted 29 July 2012 - 04:38 PM

I too have lost my Spring and Summer - it sucks!

I know all to well how hard it is to have your life highjacked by a malfunctioning body - the only thing I can suggest is be very kind to yourself, you have been through a lot -- you may still be healing from surgery and it often takes a long time to heal from undiagnosed celiac disease.

Take it an hour at a time - hang in there!
  • 0

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#5 ciamarie

 
ciamarie

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 419 posts
 

Posted 29 July 2012 - 04:49 PM

A lot of us are on pretty restricted diets, I'm still trying to figure out what I can eat due to being sensitive to msg, sulfites and soy as well as gluten. Eat the few foods you can eat, until you get some healing. Then you might want to look at something like the SCD or the 'fail-safe' diet. (SCD = specific carbohydrate diet). Due to malabsorption of nutrients, celiac can lead to all sorts of issues, as you found out. I hope you're on the mend soon, and you'll find lots of support here too.
  • 0
Gluten-free since the end of October 2011

#6 rosetapper23

 
rosetapper23

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,361 posts
 

Posted 29 July 2012 - 06:08 PM

Sometimes when you've been undiagnosed for a long time, your body ends up suffering from many nutritional deficiencies--and those deficiencies can cause all (and more) of the symptoms that you're experiencing. You might try adding magnesium, manganese, and a B vitamin complex. Magnesium runs all of the systems in your body, and when you're deficient, your symptoms can be all over the place. Manganese deficiency can cause painful, weak muscles. A deficiency in the B vitamins can cause many symptoms, but they can also be responsible for a number of neurological symptoms.

Give it time....eat well....and take the above supplements. You'll start feeling better soon!
  • 0

#7 nvsmom

 
nvsmom

    Moderator

  • Moderators
  • PipPipPipPipPipPip
  • 3,598 posts
 

Posted 30 July 2012 - 08:55 AM

Oh gee... :( You've had an awful awful time of it. (((HUGS)) How unfair. :unsure: We know it's not in your head. It's just your doctors' way to reassure themselves when they can't solve your problem.

I hope you start seeing relief soon after eliminating the common problem causing foods and taking lots of high quality vitamins (sublingual or injections might be best if a nutritionist agrees).

Hang in there. You probably have a tonne of damage done and it will take quite a while to heal, but it will heal.

Best wishes!
  • 0
Nicole Posted Image

"Acceptance is the key to happiness."

ITP - 1993
Celiac - June, 2012
Hypothyroid - August, 2012

CANADIAN

Celiac.com - Celiac Disease Board Moderator

#8 GlutenFree-MLDub

 
GlutenFree-MLDub

    New Community Member

  • Advanced Members
  • Pip
  • 20 posts
 

Posted 30 July 2012 - 10:10 AM

I really needed to read this post right now. I was going to write a post, but never know where to start. I can't tell you how to deal with what you're dealing with because I'm looking for the same guidance. I'm not going to be an inspiration right now, but knowing there are other people out there like me is helping. I have lost the past year and a half of my life to similar circumstances. Prior to that, things weren't good, but things just crashed severely in 2/2011. I had not had gut symptoms since 10 years ago and had not responded to the gluten free diet for some reason when I was first diagnosed. Because my gut damage was questionable in 3 of my 4 biopsies, many doctors told me not to worry and I was in denial because there was another cause for my gut symptoms when I was first diagnosed (a trip to Mexico). So last year, one night I was working late with a colleague and I started having trouble speaking. I had suffered from long periods of dizziness prior to that for a couple years. When I stood up from the speech issues to go get some juice, I was weaving and wobbling down the hallway. I recovered and went home, but suddenly my cognitive abilities were off and I was having trouble getting whole thoughts out. I was word searching and even began stuttering a few days later. Two trips to the ER and 15 doctors later, no one expressed concern about Celiac. Most doctors told me it was in my head. My MRIs showed UBOs which I've found research that indicates these can happen due to gluten antibodies showing up in the brain. My system continued to decline over the next few months. I could hardly move half the time. I dropped things. My legs would go tingly below the knee. There were times I couldn't lift my arms or keep my eyelids open. My vision was blurry, my eyes were 'saucy'. My 3-day ambulatory EEG showed seizure activity which explained why I would lose minutes at a time. Most of all, my cognitive state was a mess. I couldn't remember things. I couldn't finish sentences at times without asking what I was talking about. My blood sugar was crashing if I had the slightest bit of sugar/carb. I had times of severe orthostatic hypotension (and still do). Half the time when I stood up I'd have to hold on to something until I'm not dizzy. They thought I had MS, Myasthenia Gravis, hyperventilation issues leading to hypocapnia (low carbon dioxide in the blood), adrenal fatigue, lyme disease, lupus, etc. The list goes on.

When no one could figure out what was wrong with me, the disability insurance turned down my short term claims after missing 3 months of work saying that I didn't have any indication of a 'severity of symptoms' that showed the need to be out of work. So, I went back to work, sick, after being not paid for 3 mos. Two months later, I ended up in the hospital and the next 3 months of disability WAS approved.

I recovered some, but not all the way and while back at work for 4 months, I was still very depressed, brain foggy and having anxiety attacks often. I still needed 10 hours of sleep to have a half decent day. So with all those things still going on, 2 months ago, I went back to the Celiac diagnosis with my ND and stopping gluten made me feel like a human again. Brain fog, depression, pressure in the chest, fatigue... ALL GONE>

The problem now is that the glorious feeling of quitting gluten is GONE. Now, if I encounter gluten by mistake or stupidity, I lose days. I have been sick in bed since Friday night's HUGE mistake. A grill we thought was cleaned was not. We heated it to over 600 degrees for more than 30 minutes, but it still got me sick when I ate off it.

I don't know what to do... I need a support mechanism locally and I just don't have it. I'm so lost. I can't take this anymore...
  • 1
Celiac disease, undiagnosed for 20 years
Add to that 9 years of denial and doctors telling me to ignore the diagnosis :huh:
Mix in 2 years of debilitating illness from complications of Celiac, leading me back to the gluten-free light
Diagnosed Celiac 4/2004
Moving on officially with GFD and Gluten-free since 5/2012

#9 Kirstie

 
Kirstie

    Community Member

  • Advanced Members
  • PipPipPip
  • 54 posts
 

Posted 30 July 2012 - 10:34 AM

I really needed to read this post right now. I was going to write a post, but never know where to start. I can't tell you how to deal with what you're dealing with because I'm looking for the same guidance. I'm not going to be an inspiration right now, but knowing there are other people out there like me is helping. I have lost the past year and a half of my life to similar circumstances. Prior to that, things weren't good, but things just crashed severely in 2/2011. I had not had gut symptoms since 10 years ago and had not responded to the gluten free diet for some reason when I was first diagnosed. Because my gut damage was questionable in 3 of my 4 biopsies, many doctors told me not to worry and I was in denial because there was another cause for my gut symptoms when I was first diagnosed (a trip to Mexico). So last year, one night I was working late with a colleague and I started having trouble speaking. I had suffered from long periods of dizziness prior to that for a couple years. When I stood up from the speech issues to go get some juice, I was weaving and wobbling down the hallway. I recovered and went home, but suddenly my cognitive abilities were off and I was having trouble getting whole thoughts out. I was word searching and even began stuttering a few days later. Two trips to the ER and 15 doctors later, no one expressed concern about Celiac. Most doctors told me it was in my head. My MRIs showed UBOs which I've found research that indicates these can happen due to gluten antibodies showing up in the brain. My system continued to decline over the next few months. I could hardly move half the time. I dropped things. My legs would go tingly below the knee. There were times I couldn't lift my arms or keep my eyelids open. My vision was blurry, my eyes were 'saucy'. My 3-day ambulatory EEG showed seizure activity which explained why I would lose minutes at a time. Most of all, my cognitive state was a mess. I couldn't remember things. I couldn't finish sentences at times without asking what I was talking about. My blood sugar was crashing if I had the slightest bit of sugar/carb. I had times of severe orthostatic hypotension (and still do). Half the time when I stood up I'd have to hold on to something until I'm not dizzy. They thought I had MS, Myasthenia Gravis, hyperventilation issues leading to hypocapnia (low carbon dioxide in the blood), adrenal fatigue, lyme disease, lupus, etc. The list goes on.

When no one could figure out what was wrong with me, the disability insurance turned down my short term claims after missing 3 months of work saying that I didn't have any indication of a 'severity of symptoms' that showed the need to be out of work. So, I went back to work, sick, after being not paid for 3 mos. Two months later, I ended up in the hospital and the next 3 months of disability WAS approved.

I recovered some, but not all the way and while back at work for 4 months, I was still very depressed, brain foggy and having anxiety attacks often. I still needed 10 hours of sleep to have a half decent day. So with all those things still going on, 2 months ago, I went back to the Celiac diagnosis with my ND and stopping gluten made me feel like a human again. Brain fog, depression, pressure in the chest, fatigue... ALL GONE>

The problem now is that the glorious feeling of quitting gluten is GONE. Now, if I encounter gluten by mistake or stupidity, I lose days. I have been sick in bed since Friday night's HUGE mistake. A grill we thought was cleaned was not. We heated it to over 600 degrees for more than 30 minutes, but it still got me sick when I ate off it.

I don't know what to do... I need a support mechanism locally and I just don't have it. I'm so lost. I can't take this anymore...


I feel so sad reading all of these and seeing how so many people have needlessly suffered due to so many uneducated doctors who do not understand!

I think the really really important thing is to not fall out with your body. It's difficult and I often find myself in tears of anger and frustration, blaming my body and hating it! When really that's no help at all.

Also, talking to people who understand. The confirmation that I WASN'T crazy was such a relief. Being a young woman, every doctor I saw blamed my periods! (Which were agonising, sure) But they also accused me of being anorexic (once in front of a few medical student's watching, very embarrassing and unsympathetic!) I've been told I'm depressed, brushed aside with IBS, doctor's have laughed saying "If I didn't know any better I'd say you were pregnant!" Great thing to say to a scared, alone, 16 year old girl! But the worst of all was being told I was FINE.

Since when was chronic constipation, fatigue, brain fog, memory loss, reoccurring mouth ulcers, constant nausea and painful vomiting, fainting and general weakness fine!?

You need to talk about your symptoms, to people who understand, and have patience with yourself and your body. Remember that you WILL get better.
  • 1

#10 cavernio

 
cavernio

    Advanced Community Member

  • Banned
  • PipPipPipPipPipPip
  • 428 posts
 

Posted 30 July 2012 - 11:45 AM

Hang in there, I know you can! Don't let people, especially doctors, get to you! No one really knows how badly you feel except for you, so next time a doctor tells you 'you're fine', insist that they just keep looking for other reasons why you're not fine. Your family loves and cares for you, even if they don't understand. It's unfortunately perfectly normal for celiacs to have reactions to gluten last for days or much longer. That gluten you ate on Friday might have consequences that last months.
I can't imagine how awful it must be to be so sick, having a pancreas tumor as well as celiac disease symptoms at the same time, but keep on being very, very careful with what you eat. Don't you dare eat anything that you're not 100% certain is gluten free! (FYI, I've seen black pepper that has wheat as an indredient, so double check yours.) And don't risk other foods that you know don't agree with you either. Its bland and its boring but healthy and boring is better than tasty and sick. And yes, all this stuff could be celiac disease bothering you, even with your tumor gone. Nutritional deficiencies and inflammation can cause all sorts of weird and awful problems.
I really hope you will start to feel better soon, and I hope that your surgery went alright and that there's no further complications with it. And it's alright to cry, I do and I'm not half as sick as you.
  • 0
diagnosed Jan 2012, bloodwork only
June 2012 positive visual of celiac disease from gastroscopy

#11 JoyMurphy

 
JoyMurphy

    Community Member

  • Advanced Members
  • PipPipPip
  • 46 posts
 

Posted 30 July 2012 - 03:19 PM

I really needed to read this post right now. I was going to write a post, but never know where to start. I can't tell you how to deal with what you're dealing with because I'm looking for the same guidance. I'm not going to be an inspiration right now, but knowing there are other people out there like me is helping. I have lost the past year and a half of my life to similar circumstances. Prior to that, things weren't good, but things just crashed severely in 2/2011. I had not had gut symptoms since 10 years ago and had not responded to the gluten free diet for some reason when I was first diagnosed. Because my gut damage was questionable in 3 of my 4 biopsies, many doctors told me not to worry and I was in denial because there was another cause for my gut symptoms when I was first diagnosed (a trip to Mexico). So last year, one night I was working late with a colleague and I started having trouble speaking. I had suffered from long periods of dizziness prior to that for a couple years. When I stood up from the speech issues to go get some juice, I was weaving and wobbling down the hallway. I recovered and went home, but suddenly my cognitive abilities were off and I was having trouble getting whole thoughts out. I was word searching and even began stuttering a few days later. Two trips to the ER and 15 doctors later, no one expressed concern about Celiac. Most doctors told me it was in my head. My MRIs showed UBOs which I've found research that indicates these can happen due to gluten antibodies showing up in the brain. My system continued to decline over the next few months. I could hardly move half the time. I dropped things. My legs would go tingly below the knee. There were times I couldn't lift my arms or keep my eyelids open. My vision was blurry, my eyes were 'saucy'. My 3-day ambulatory EEG showed seizure activity which explained why I would lose minutes at a time. Most of all, my cognitive state was a mess. I couldn't remember things. I couldn't finish sentences at times without asking what I was talking about. My blood sugar was crashing if I had the slightest bit of sugar/carb. I had times of severe orthostatic hypotension (and still do). Half the time when I stood up I'd have to hold on to something until I'm not dizzy. They thought I had MS, Myasthenia Gravis, hyperventilation issues leading to hypocapnia (low carbon dioxide in the blood), adrenal fatigue, lyme disease, lupus, etc. The list goes on.

When no one could figure out what was wrong with me, the disability insurance turned down my short term claims after missing 3 months of work saying that I didn't have any indication of a 'severity of symptoms' that showed the need to be out of work. So, I went back to work, sick, after being not paid for 3 mos. Two months later, I ended up in the hospital and the next 3 months of disability WAS approved.

I recovered some, but not all the way and while back at work for 4 months, I was still very depressed, brain foggy and having anxiety attacks often. I still needed 10 hours of sleep to have a half decent day. So with all those things still going on, 2 months ago, I went back to the Celiac diagnosis with my ND and stopping gluten made me feel like a human again. Brain fog, depression, pressure in the chest, fatigue... ALL GONE>

The problem now is that the glorious feeling of quitting gluten is GONE. Now, if I encounter gluten by mistake or stupidity, I lose days. I have been sick in bed since Friday night's HUGE mistake. A grill we thought was cleaned was not. We heated it to over 600 degrees for more than 30 minutes, but it still got me sick when I ate off it.

I don't know what to do... I need a support mechanism locally and I just don't have it. I'm so lost. I can't take this anymore...


I have had the same problems, my knee would buckle out for no reason, fingers and toes would tingle and go numb. STUTTTERING!!!!!! All the time!!!!!!!! Can't concentrate, have lost my witty comebacks......I used to be pretty funny (well, at least I thought so)... My brain would shutter and flutter. I had weird optical illusions like my daughters being out of focus and shaking up and down like on the old tvs with rabbit ears that needed to be adjusted. Conversations were so embarrassing, I would sometimes stop and cry. It is so nice to hear I am not alone. The only ones that get it are other celiacs. I was so glad to hear your story. I am so sad to hear it as well. I don't know how you were able to work! I couldn't even focus to read a book. Thank you for making me feel ok.
  • 0

#12 JoyMurphy

 
JoyMurphy

    Community Member

  • Advanced Members
  • PipPipPip
  • 46 posts
 

Posted 30 July 2012 - 03:59 PM

I tried to write a response, and I lost it....
I wanted to write to allof you, but I don't have that much stamina. You have all moved me to tears. It is nice not to feel so alone. I have felt so isolated. Laying on my couch for months, not being able to move, watching my friends drive by, water their plants, and no one stopped to visit. They all thought I was faking it, or it was in my head, i was depressed, stressed or unhappy in my marraige. I think even my husband believed that it was stress. He never denounced it. My dad never doubted me. He knew there was something wrong.
One friend texted me when she heard the diagnosis, " I heard the good news!!". I said, " what was that? That I have celiac disease? That I have the same rare tumor Steve jobs had? Or that im not just stressed??"
The next week my cat had to be put to sleep, it was sick and old, and I will spare the gross details. This friend responded with so much concern over the dead cat, and asked " what really happened?". I told her, I'm not sure, I think it was stress!"
The only people that got it were my friends that were nurses and those with celiacs.
I am so glad to be here.
I t amazes me how long a glistening can last. I was bad the last few days, today is up and down. It's hard for others to understand it. I know bc I used to be one of those others who thought, " what's the big deal.". Oh, I get it now, and I am so ashamed I ever thought that before.
Thank you all
  • 1

#13 justlisa

 
justlisa

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 164 posts
 

Posted 30 July 2012 - 05:10 PM

I cried like a baby...still am truth be told.

I know, firsthand, what you feel... I'm there...

I've been "dying" for the last few years. Can't tell you how many times I've said, "I probably won't 'be here'"..."I just want...blah blah blah...while I still can...", etc, etc. And, of course, I'd get the obligatory "you'll be fine"..."you're not going to die"...yada yada yada.

I would just want to SCREAM at people (more often than not, I didn't scream, though...),"I'm not looking for sympathy, you morons"...or the rest of that crap! I really think I'm dying here! Nobody really "got it". How could they, really? All I really wanted was to make sure my son was going to be "okay". I wasn't looking for a pity party. In fact, it wasn't the fact that I felt like I was dying that made me want to scream...it was all the people who were poo-pooing me...not helping me...making me feel like a crazy person. Even those who were watching me deteriorate a little more every day.

When you are that sick...getting worse EVERY DAMN DAY...and NO ONE can figure out what's wrong with you? When you can't do the simplest things anymore? How can you not feel like you're dying???

While I'm still sick, I have found HOPE that I could get better.

With all that commiserative-ranting aside...I agree about, perhaps, looking into an immune suppressor. I believe you need to mitigate some of your autoimmune responses while you heal. You're too sick to wait
hat out, imo.

We are here for you...and we "get it"...
  • 1

#14 JoyMurphy

 
JoyMurphy

    Community Member

  • Advanced Members
  • PipPipPip
  • 46 posts
 

Posted 30 July 2012 - 06:48 PM

I've heard a lot of mention of immune suppressors. What exactly do they do? How will they help me? I'm willing to do anything.
  • 0

#15 justlisa

 
justlisa

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 164 posts
 

Posted 30 July 2012 - 09:31 PM

Joy...

First concern would be where you are in your recovery from the tumor... Your doc can advise you on that.

My thinking (and I'm certainly not a doctor...just someone who went the immuno-suppressant road for my supposed RA (rheumatoid arthritis) for the past 4 years...is that you are possibly (probably?) having such a monsoon of autoimmune symptoms that your body (and let's face it, emotions) just can't handle it all right now. And, it will take time for you to heal your body (celiac). It's not going to happen quickly, from what I've learned...the more severe/progressed we are, the harder/longer it takes... You don't just have to remove the gluten...you have to heal your gut...but, the most important piece for both of us is that our bodies "get the signal" and stops attacking itself. Get our immune systems to relax... And, this will take time.

So, I'm just thinking that an immune suppressor (humira, enbrel, etc) might help take some of your autoimmune symptoms down a notch (or 20) while you heal... Just a thought...I think it's something you can at least talk over with your doc... :)
  • 0




0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: